21 August 2019
World At Her Feet
Christina has NF2, and has written a moving blog that is partly about living with the condition, and partly chronicling her travel adventures. The following is a post from her blog, and the images are from her travels.
Sometimes i forget what my life used to be like...
What did I worry about before brain tumours came into the picture?
What was it like being able to hear people whisper?
How nice was it to not hear ringing in my ears?
It’s so strange t think back on just three years ago when I never even considered having an MRI and thought I had at least 50 more years before hearing tests would become a routine part of my life.
I can’t believe how quickly this has become normal to me.
A year ago, the thought of my tumours growing terrified me. Like even the tiniest growth made me fall apart.
Having MRI’s and hearing tests every 3-motnhs left us on a constant emotional rollercoaster. We were living our lives a few months at a time, and with each new round of scans it would rest again.
But somehow, miraculously, it doesn’t feel like a crisis anymore. This is just my life now.
Over the last year, my MRIs have shown consistent growth on the tumo9ur affecting my food ear, but nothing significant. My doctor even let me take a 6-month break between tests last time!
That may not sound very big, but for me, it made a huge difference. I finally had a chance to stop worrying about results for a bit. It broke the cycle.
After my wonderful break, it was time for my most recent round of scans.
For results to be truly good, my tumours would need to be gone. My hearing would need to be restored and tinnitus silenced. I would need to be cured.
Of course, that’s not my life anymore. My good news bar has substantially lowered.
It turns out my larger tumour has grown again. My hearing is stable though, and we found out the rest of my body (other than my spine) is tumour-free.
But because of the tumour growth, I’ll have to start treatment again in the not so distant future. So, the results were mixed. Not exactly good but not too bad either.
Yet somehow, I left my doctor feeling utter relief. When not even a year ago I probably would have left my appointment in tears.
Gradually, emotionally, somehow… I’ve adjusted. Bad news doesn’t feel quite as big, and I’ve come to accept that this what my life looks like now.
Last December I wrote a post called, “The Life You Almost Lived”. I wrote it when my tumours initially started to grow after stopping treatment.
Everything felt overwhelming. I thought my happiness level had peaked- like each year was going to get harder and harder.
Physically that’s probably true. My disorder is progressive, so it has no choice but to get worse over time. But how handle it emotionally and mentally WILL get better.
Somehow through all of this- because of this all this, I have managed to become truly happy.
Travelling has served as an invaluable distraction this year, and it’s shown me the importance of living beyond my condition. Of pushing myself past my limitations and letting my life be more than just what happens in between my doctor appointments.
Instead of offering the usual “good luck” or “praying for good news,” a wise relative of mine said the following phrase to us before getting my results last week: “I hope that the more you learn, the less scary it becomes.” Her daughter is currently battling cancer, so their family is all to familiar with dealing with this world.
As we walked out of the hospital that day it thought about her well wishes and how accurate they are for us. All of this has become less scary. A lot less scary. And as scariness has waned, we’ve learned to enjoy our live within the circumstances we’ve been dealt.
Somehow, over time, our new normal doesn’t look so bad after all.